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Fibromyalgia & New Morning Experiences
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powersuit posted:
Hi All,

I've been looking all over but can't seem to find an answer to this specific question.

I am 33 yrs old and have had FM for about 10 years. As we all know, some times in life are more stressful than others which often results in management of symptoms and truly taking care of ourselves being more difficult...I'm certainly in one of those times!

I am worried, though, because although I'm doing my best to eat well, get rest, and exercise, my symptoms have changed in the morning. My pain and stiffness level has stayed the same, but waking up has become almost impossible. It's beyond even my normal FM morning exhaustion and lasting fog, for which I already take Nuvigil. This is more to an inability to move or even register the snooze button for what it is...almost like having a huge heavy blanket on top of me and not having the strength to budge underneath. I've been late for work and have found myself just dozing off at my desk.

Has anyone else experienced this? Is it just a sign that I'm overdoing it and need to cut back & restore/heal? Or could it be a more drastic sign? I have a strong family history of psoriatic and rheumatoid arthritis, as well as having psoriasis myself, so I do try to be aware of changes in my body's responses to different situation.

Thanks for any help!
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xperky responded:
Yes, I think you should watch your symptoms closely, having that extreme fatigue right now. I say that because of what happened to me. Yes, I also have FM, but last Spring I got more fatigued than normal - by a lot. Like you, I didn't even hear my alarm any more. After that week or so, I got swollen joints in my hands which I hadn't had before. Long story short, after a few months I was diagnosed with RA.

So, I really hope you don't develop any rheumatic arthritis, but as you already seem to know, you need to keep a journal of specific symptoms. Hopefully, you will get back to normal soon! Do you already have a rheumatologist on your team?
With Compassion,
Margaret
 
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booch007 responded:
Dear Powersuit,

Life changes things around all the time. You need to have your EYES WIDE OPEN. When there is a great change like this in your personal response you need to be seen and labs checked and a reveiw done by the physician.

Also asking here is a great idea as we walk the walk. My mornings ARE MY WORST...always have been and a nap can set me back as well. I have numb hands in the morning , stiff neck and legs at times and a headache and all this begins to get better as I walk and wake and then take my meds.

I have often said I live "ground hog day!" Everyday I start all over again to get through that wake up moment when pain and FM joins me in the bed. Where under the sheets I have to stretch each muscle from fingers to toes in order to walk to the bathroom.

So, you might just be changing in symptoms and it is our dragon that we drag around with us, or something else is up*...thyroid off, RA, LUPUS or other things that seem to creep in to this mess we are in.

Please get checked.....

It may be something so simple. So many here are on muscle relaxants, an antidepressant and a pain med as their mix. If that is the same for you, maybe a channge is due for your meds in a tune up mode. Ask the doc.

Good luck, let us know the follow up on this. Thanks, Nancy B
 
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powersuit replied to xperky's response:
Margaret,
Thank you so much for your thoughtful response. I have been increasingly worried that the RA or PA will rear its head sometime sooner rather than later, especially given the pattern of stress/illness that my fibro seemed to develop with.
I like the idea of keeping a journal about the symptoms--I've been doing so mentally, but I can see the power of a physical record!
Thanks again and best wishes,
Kelly
 
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powersuit replied to booch007's response:
Dear Booch007,
Thank you very much for your kind reply. I identified with your descriptions of "ground hog day"...it resonated with my normal symptoms as well as the change that sparked my curiosity. It is true that the combinations of medicines is so complex and our responses can change as well. Also, the mention of thyroid differences is another thing that I didn't think of.

I'll definitely be going to get checked, as you and Xperky suggested. I appreciate everyone's compassion here!

Kelly
 
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sp2001 responded:
You sound a lot like me, I'm also 33 and have psoriasis. Psoriatic Arthritis is something I wonder about too.

As for mornings, it does seem to be the worst time for us
I finally started keeping track of how I felt and that's when I got the FM diagnosis. Mornings were definitely the "red flag". I too have a horrendous time waking up. I finally put my alarm clock across the room and also alarm on phone. I timed them a minute apart, and that helped too. Can't hit snooze when 2 alarms are going off across the room! This way I HAVE to get out of bed to silence them. Not fun, but it works.

I second the thyroid testing, I have hypothyroid and take medicine for that. Good luck!
*hugs*
Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting 'Holy sht! What a ride!' ~Hunter S. Thompson
 
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powersuit replied to sp2001's response:
Thank you very much! Although I never like to hear that others are going through difficult situations, it is helpful to hear about those mentioning a similar age.

Although I will be traveling for work and unable to visit the doctor for the next couple of weeks, I have made the appt. for the thyroid test and started a dedicated symptom journal, as you and the other wonderful respondents have suggested. I know it will help to be confident during my visits with a concrete record of change over time.

It's also so wonderful to know that there is a community of support...combating a feeling of isolation is half the battle!

Thanks again!
 
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dakotaspirit1957 responded:
Hi... You are never alone when it comes to waking up... I am a profound morning person... Love my time to myself early in the morning and that means atleast 5 to 5:30 am to beat the rest... But it is getting harder and harder to wake every morning... I have an i-phone that sits on a special radio that blasts it's way into my morning... and if I don't wake before it goes off... it wakes almost everyone else... Luckily my inner time clock beats it by at least 10 minutes and I make little noise lol... Usually anyway lol... When it doesn't I sleep right thru it... and it is set as loud as it can go...

I may get up after some stretches... but 9 times out of 10 I fall asleep drinking coffee on the patio... unless I bring out my laptop and start working on it right away... then it is 8 times out of 10 lol... I type the strangest messages here in my sleep lol...

I always have to exercise before I can even put my feet on the floor... not heavy just stretches... they help sometimes to get me alert....... the pain they can cause can wake me lol... but if I don't do them I can't make it to the bathroom without falling... and I definitely never make it to the porch... I wake very stiff.. headachey... and sore... My pain level doesn't like me one bit... Either that or you might say it is though-rally enjoying itself lol...

I take my pain meds on the way out the door... turn the coffee on... and vegetate and hope to stay awake... but if I don't I have my alarm set every half an hour so I can b e awake when I need to wake up my family... I am a human alarm clock.. lol..

My logs include a pain level chart that shows my ups and downs and stresses/triggers if any... and my treatments... it also helps me keep track of when I take my breakthrough meds for I take them when needed and not at a specific hour like I do the rest of my pain meds... I also include a diary of moods and what I accomplished during the day...

My days end like clock work... at about 4 to 5 pm my pain level climbs back to where it has to be dealt with big time.... it is usually worse then morning... And continues thru -out the evening and night to some degree... This is when I do my 3rd and 4th exercise program... no matter how it hurts I have to stretch at least... And it usually helps enough to at least help me move again...

Pain cycles can be different with each of us... The reasons we are sleeping and in pain may or may not be FM... If it is a new symptom I have it checked... Or at least try to... Sometimes discussing new problems with my PC is like talking to a brick wall... It always has an excuse before a rationalization... That's what I get for having multiple problems... lol...

But talk to your Dr... perhaps you are like me... I am on too much meds that make me sleep at night... I now take one in the morning and it works much better... it still can make me drowsy... but not comatosis lol... And it helps my Parkinsons better taking it in the AM... and the anxiety and manic bi-polar... I think I was sleeping away most of the effects before lol...

Or maybe you are taking meds too late... I have to take mine about 7... and I still am awake at 10 lol... but I am wierd... most sleeping pills either wake me up or put me to sleep the next day lol... I am on one now that only does that part of the time.. it usually puts me to sleep in 3-5 hours... unless I take it too late...

I guess this is pretty long... I am sorry... I hope I helped a bit... hang in there...

take care... love... Jan/Dakota


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